surgery vs. no surgery...please help!

[Susie]

My son is 2-1/2 and has a robpi. He is totally functional for a boy of his age and basically can do every movement except external rotation and he can supinate his hand a little past neutral. The doctor recently recommended a muscle tendon transfer for external rotation when he is age 3-1/2. She said that if we elect to not do the surgery his shoulder may develop abnormally, but with the surgery it could still develop abnormally but probably not as bad.

I would like to know if there are any families of children with similar recovery that elected not to have surgery or Adults with the birth injury that did not have such surgery available and what their outcome has been. Are your/your children's shoulders deformed? If so how has it affected your lives?

To the families that elected to have such surgery...Did the benefits outweigh any dis-benefits?

The surgeon we met with was going to take a muscle from his shoulder that assists the arm to move in toward the body. She explained that he would lose this movement but gain external rotation although; in time other muscles would compensate the movement he would lose. Does this sound right?

[tnmoore]

Hello I am a 32 yr old left OBPI, and I did not have any intervention, except a couple of PT appointments. However my parents have told me that I had pretty good movement as a child, and therefore they elected not to do anything. The doctors I saw had no clue what to do and so my parents thought I was getting along well enough just to leave it alone. My parents told me if my arm was worse than what it had been they would have pursued different options. The only thing that developed as I was growing was an increase of my elbow contracture. It gradually increased to 90 degrees where it has stopped. That has been the thing growing up that has limited me in areas of living. I was blessed not to have pain. Now at age 32 I am developing nerve irritation in the elbow and my noneffective arm is getting fatiqued and sore from all the overuse.. For me I too had a weak external rotation, but I have pretty good ROM of my shoulder which most OBPI do not. So my main problem that developed was my contracture at my elbow, but every BPI is different. I do not know what to say about your son, but I am thankful my parents left my shoulder alone, and the thing to help keep the elbow from contracting is to use it, stretch it, and do in home therapy to keep the joint in the elbow loose-that is the one thing I wish I would have done is more therapy and make myself carry heavy items in my left hand to constantly stretch out the biceps tendon.

[admin]

Susie:
I have been there. Our stories sounds very similar. My daughter recovered wonderfully without surgical intervention. When she was 2 we decided to have secondary surgery. The same type of surgery that you described along with the anterior caps release of the shoulder. Prior to surgery she was able to do almost everything. She was able to play with other children and do whatever they were doing. The only thing she couldn't do was touch the back of her neck/head. Touch the very top of her head. Reach behind her back. She also had problems with external rotation and she couldn't fully supinate.
Post Op she has accomplished all of the above with a remaining slight problem when trying to reach all the way behind her back. I am more than pleased with her progress and I feel that I made the right decision to go along with the surgery. She never really noticed the things/movements that she was unable to do, but after surgery she would say...
"mommy, look!!!" when she touched the top of her head or behing her neck. It gave me tears in my eyes everytime. Surgery is a huge step and something that you will have to dedicate your time with for surgery itself, and most importantly post op therapy.
If you have any questions that I may be able to help you with please feel free to email me anytime.
Godd luck with your decision.
It's hard!! We all know that!
~Krista~
Mariella's mommy

[katep]

Susie,

Has your child had an MRI or other scan of his shoulder? If his shoulder is still well developed with no abnormalities, there is a good chance it will stay that way. Most studies have suggested that malformation of the shoulder joint would have been well underway by 2 1/2. If you know how his shoulder has developed so far, it might help take away some of the "what ifs" and guesswork about deciding on surgery.

Kate

[admin]

Kate's post reminded me about something.
We actually decided on surgery b/c of Ella's MRI. We knew we would do this particular surgery, but didn't decide on sooner or later. The MRI showed a dislocation issue so Dr Waters wanted to do it sooner.
That's it!

[admin]

we have a similar story..
and decided to go ahead with surgery.. we had an MRI done when he was 6 months, 1 1/2, and 2. some time between 1 1/2 and 2.. abnormalities developed.

he had decent in comparison, movement with his effected arm, but after the surgery.. things started to improve! I couldnt beleive it myself. I went in with the attitude that..."well, it can't hurt, and I want no stone unturned"

I look back... and I do it all over again, again and again. He's a new kid!

[kamren]

I didn't even know there was something besides PT until this last August. I cried and cried when I discovered they could actually do something to help me. Dr Shenaq did the ModQuad for me April 15. It was hard being a Mom of 5 and wearing the splint, but I did discover how very little my left arm did, because outside of driving and changing diapers, it really didn't stop me from doing things the way I normally did.

My supination is much improved and where I could only
lift my arm about 20 degrees before, I can now lift to about 90. I have a bone spur in my shoulder that Dr Shenaq will be taking care of this Fall that is inhibiting more movement right now.

I have had to relearn exactly HOW to use my left arm. I was not lifting etc it properly because of the BPI. That has been the hardest part. I am so used to contorting my body to do most things, and learning not to do that anymore (that I don't even have to) is difficult.

I sooo wish there had been something like this to help me when I was a child. I think it would have been much easier to adapt then.

[admin]

I really, really appreciate you all taking the time to share your stories with me. We are unaware of any shoulder deformity at this time since we have not had any test for it what so ever. I am thinking maybe we should consider an MRI to take a good look at the shoulder and its development. And, I am looking to get a 2nd and 3rd opinion.

I would still like to hear from more of you if at all possible.

[Susie]

the above post is from me! The original poster.

[rachelcasa]

I am not sure if this can help you out or not. I am 32 yrs of age and had surger(mod quad) with Dr. Nath last Sept. I cannot suppinate my arm all the way and have a bit more external rotation. Dr. Nath told me at the time of my surgery that if I would have had my surgery when I was much younger, the chances of recovery would have been a lot better for me. I would definately recommened you ask your physician this question. I think it would help you out in making the right decision. I know it must be so hard to make that choice for your child as a parent. I wish you the best of luck and to your son as well.